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Patient Stories

Patient Stories

Ruby - Age 6

Ruby's Story

6 year old Ruby was admitted to the Oxford Children’s Hospital (CHOX) in June 2016 following rapid onset paraplegia and acute urinary retention. She was diagnosed with Acute Disseminated Encephalomyelitis (ADEM).

Ruby receiving physiotherapy

She was initially seen by the acute multi-disciplinary team (MDT) which included Physiotherapy, Occupational Therapy, Neurology and Speech and Language Therapy. After 1 week’s admission she was medically stable and ready to receive intensive rehabilitation from the Paediatric Neuro-Rehabilitation Team, based cross site at CHOX and Nuffield Orthopaedic Centre (NOC).

Whilst on the ward she received daily treatment from the neuro-rehabilitation Occupational Therapist (OT) and Physiotherapist for 2 weeks. Ruby also had a joint Physio/Orthotics assessment and then provision of a splint to improve her walking pattern and stability. Once safe to return home she was discharged with the plan of attending the NOC for a transitional period of 1 week for intensive therapy under the early-discharge model.

During this transitional period Ruby was seen daily (Monday-Friday) and the team regularly reviewed and discussed her progress during the week. It was felt further input was required in order to maximise outcomes and support her transition back in to the community. With this in mind she attended the hospital school and the OT provided additional support with equipment and advice to support in the classroom.  There was the opportunity for Ruby to attend 2 aquatherapy sessions for the Physiotherapist to model appropriate water based activities that her family could then continue in the hotel and local pools.  Both Ruby and her mum were seen for regular sessions with the clinical psychologist.

Following early referrals to the community services there was a transfer of care after her transitional week, however Ruby continued to attend weekly MDT appointments at the NOC for a further 6 weeks to support this successful transition. This was finalised with a MDT meeting, held at her school, with the family and school staff to ensure that all aspects of her care had been addressed and appropriate advice and strategies were provided to help her optimise performance in tasks and activities within the school environment.  Ruby also underwent a neuro psychology assessment in September 2016

Ruby was successfully discharged from the service following the MDT meeting at the end of September and the community services are meeting her ongoing therapy needs in the educational and home setting. She returned to Year 2 at school and her learning support assistant (LSA) has now been trained to help with her catheter which has meant that Mum no longer go into school every day.

When Ruby first met the neuro rehabilitation Physio and OT in June her Mum clearly said that their family aim was for Ruby to walk down the aisle at her Mum’s wedding in October 2016. This was quite a big goal as at the time Ruby had no head or trunk control and was unable to move her legs.  With a strong working relationship between the neuro rehabilitation therapists and the family this goal was achieved and Ruby did indeed independently walk (run!) down the aisle at her Mum’s wedding much to the delight of the whole family.

“I thought that the service was fantastic and we thought it was down to the care that she had that she made such a quick and successful recovery,” said Mum when asked about the whole period. “They weren’t just caring towards Ruby, they were caring towards all of us as a family and that made a big difference”

Patient Stories

Alice - Age 7

Alice's Story - Paediatric Neurosciences

On 18th July 2010, baby Alice was welcomed into the world by her parents, Ed and Sam Stott. The first born, she developed as any baby was expected to and the new family spent time getting to know each other.

In the Summer of 2011 Alice started to experience ‘jerks’ which were thought to be as a result of a fever but quickly these became more regular. As a result she was referred to Basingstoke where she was diagnosed with benign myoclonic epilepsy.  These initial ‘jerks’ weren’t regular and seemed to be well managed with medication.  At one point there was a period of 6 months were she was asymptomatic for six months and Ed and Sam began to believe that there wasn’t so much to worry about.  The team at Basingstoke set up an open access arrangement for Alice where if there was anything wrong they could call or email or if necessary, take Alice straight into the hospital.  A series of genetic tests were also undertaken due to a history of paternal epilepsy, this was ruled out.

In 2012, Ed and Sam welcomed Alice’s brother, James, to the world. What should have been a happy time for the family was marred by the constant worry about Alice’s condition.

In October 2013 Alice experienced her first whole body tremors, otherwise known as seizures. These would come in clusters and last up to 30 seconds at a time.  At one point she experienced over 100 tremors in a period of 2 hours.  This was distressing and frightening for the family and Alice was able to predict the seizures, saying, “it’s doing it”. Unfortunately the medication was no longer controlling the seizures and Alice was admitted via ambulance to Charlie’s Day Unit at Basingstoke hospital 8 times in 6 weeks as a result of her seizures.  This would sometimes be a difficult process as Alice’s post-seizure medication would make her “bounce off the walls” and some ambulance crews were reluctant to transport her as they did not understand why an ambulance transfer was warranted despite the fact that she held a statement, now known as an Education, Health and Care Plan.

At this point referral to the specialist epilepsy team at Southampton was the only sensible option. The consultant immediately made it clear that she was looking to solve the problem of Alice’s epilepsy rather than to manage it and arranged an array of tests.  Having initially been told that it was likely that Alice would grow out of her epilepsy, this was a reality check for Ed and Sam and they realised her condition may have a long-term impact on the quality of her life and also of the family.

Over a period of time, Alice was tried on a number of different drugs with varying degrees of success, but it was found that she had developed a form of drug resistant epilepsy which meant that as her body became used to the drug, it would stop being as effective and the seizures would no longer be controlled.  Throughout all of the meetings with the team, it was a very collaborative approach which involved the consultant, the epilepsy nurse specialist, Alice and Ed and Sam.

In September 2014 Alice started school. A significant seizure on her first day was not quite the plan and she was admitted to hospital.  This was upsetting for all involved and Alice was only able to complete half-days including a nap due to her medication at first.  At this point, Sam decided not to return to her work as a lawyer as she needed to be able to support Alice at all times if she had a seizure.   New medication improved things and Alice was eventually able to complete mostly full weeks at school.

In June 2015 Alice was referred on to a Children’s Epilepsy Surgery Service (CESS), one of 4 in the country, for decision whether she would be eligible for epilepsy surgery. The family were supposed to have heard the decision by September but in May 2016 there had still been no outcome.

Talking to Ed, the following things really impact on the family as a result of Alice’s epilepsy:

The unknown

Waiting on the decision from CESS centre means that they feel unable to move forward. They are in limbo and do not know whether Alice will have to cope with her epilepsy forever or whether an operation could “fix her”.  Their biggest fear is that they will not make a decision and will give them the option to decide.  They want the experts to tell them what the next step is. 

Sleep deprivation

Ed and Sam take it in turns to watch Alice sleep when she is fitting to ensure that she is ok. This means that they do not have a normal sleep pattern and James often sleeps in with the other parent as they “do not want him to feel pushed aside as a result of Alice’s epilepsy”.

Speed of support

The nature of epilepsy is that a patient needs appointments when they are in status, not when they are good. Ed and Sam have access to the epilepsy specialist nurse team at Southampton but feel that others in hospital may need their time more if they have a question and so sometimes do not contact

General Communication

Clinic letters regularly take approximately 3 weeks to get processed and sent to the GP. This means that the GP will not amend any medication until the letter is received, delaying important changes to a regime that could improve Alice’s quality of life.

Family suggestions for improvement

  • Access to a community support team who could be a link into the hospital. Does not necessarily need to be an Epilepsy specialist but more of a case manager to help with any school liaison, general questions and be on the end of the phone for the family.
  • Improved turnaround of clinic letters or change of protocol for GPs to amend medication in a timelier manner.
  • Improved turnaround times for clinical decision.

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